2 more nights until CALIFORNIA! 1 more day!

Today I have been getting the boys stuff ready to go.  I am so excited!  I am also nervous.  Oooo.  Now that I think about it, I am really nervous.  But it will be so wonderful to get away!  

As you know, I have been annoyed, stressed, and everything else lately.  So we need a break and a breath of fresh, salty, sea-air. 

 If anything, Jett is already “BOOOOORRRRRRED!”  So at least we will keep him busy.  
Last night, Santana vomited.  I know for a FACT that it was vomit, it was so so stinky.  For those who are just now following the story, Santana had a surgery done, called the Nissen Fundoplication which is where they tied his stomach around his esophagus.  This is supposed to prevent vomiting with reflux and in turn, prevent aspirating vomit into his lungs, which can cause him to die instantly.  So anyway, his is vomiting through it and I was going to take him in to the doctor to have him checked out before our trip but they could only get him in at 5:30 today and I did not have a nurse to help me at the time.  So we will just pray for the best.  But what we think, he is just really backed up.  We did a suppository today and got some out.  But not enough, so PRAY FOR POO!

So, going on a trip is a lot of work with Santana.  We have to remember all his food mix, food bags, feeding machine, suction machine,  nebulizer, masks, 9 medicines, oh…CHARGERS for all that, and the Pulse Oximeter (for heartrate and oxygen levels), diapers, wipes, AFO’S, Quilts to lay on, Blankets, Pillows for positioning, Bed Wedge, and everything else.  Not to mention Tyree’s stuff and things to entertain Jett with. It is a lot of work which is why I am packing my clothes TONIGHT so I have less to worry about tomorrow. Well, because I am my mother’s own daughter, I will spend tomorrow night cleaning all night. That is just what I have to do before vacation.  Plus I want it to be clean when our friend Kevin stays here to take care of the house and animals.  I am relieved to know a police officer will be taking care of our house.  Might be the last time we get to use him to watch our house as he decided he is grown up and going to get married! Congrats Kevin!  Which brings me to a new conversation. 

Kevin is getting married in Florida and we are considering going and hitting 2 birds with 1 stone.  We know someone that went there to do suit therapy and we would consider it for Santana.  The only thing that would keep Santana from doing that is his hips not being in place.  But we will see.  It is only a thought right now.

I want to thank all of you who are buying Dbacks tickets.  We really appreciate it!  If you can, try and give me a number by tomorrow so I can make sure you are all together.  We may just take Santana’s money and buy the ones we have so there is more time…an extra week or so for you all.  Please let me know asap!  Thanks to all those who have tried to promote it!

I got to go finish up before my time is out. There is a few things that we REALLY need to pray for:

1. Santana’s Constipation problem
2. Santana is really stiff right now and his spine is twisting, pray for LOOSENESS!
3. Pray for the sell of our house.  We were in negotiation but they were just asking for too little!  Pray they will change their mind or send a BETTER buyer!
4. and of course for the safety on our trip! 

Thank you and God bless to you all!

Happy Birthday to my Hubby! And Congratulations Graduate to Jett!

I want to start out by wishing my husband and father of my beautiful boys a happy happy birthday!  It has been a crazy week.  We have been counter-offering on the house and getting ready to leave for California on Friday.  It had to be a pretty awesome birthday for James because Jett also graduated Kindergarten! I can’t believe how grown up my first baby is!

Speaking of, yesterday, as you know, it was a tough day for me.  I was over sensitive.  Santana was too stiff when I went to get him in his wheel chair and I was frustrated.  I put him back in his bed and went to do his meds and then decided to lay with him.  I was sad and annoyed at this point.  Jett turns and looks at me and says in the most serious voice, “Don’t worry mom, everything is going to be ok.  Jesus is right here with you, he will protect you and Santana.  Don’t worry.”  I thought a mother was supposed to stroke their child’s hair and say secure words like that, not have her 5 year old do that to her.  But how comforting it was.  So, together we prayed for Santana and then cuddled until about midnight, I had to hook him up to his feeds.  Oh my, I guess you can say I am really missing him.

I know one thing that brings me back is the fact that Tyree looks JUST like Santana did.  Everything about him reminds me of him.  So maybe Tyree was a blessing to have.  But sometimes I feel like Santana is being replaced.  It cuts like a knife.  Sometimes it burns my eyes to even look at Tyree.  I just hold him and never want to let him go.

Santana did GREAT today.  He held his head up very good in therapy today!  I will try and get some video up.  Oh, I think I owe you all a video anyway…can’t remember what that one was.  Hmmmmm.

Anyways, check back for those.  God bless, and Keep on BELIEVING! 
 

ummm…BLANK

Today I braved myself and went to Jetts school to help out with a water day. Maybe deep down inside I chose to help knowing there was kiddie pools and lots of water. I guess I wanted to keep my eyes on things. It was Chaos, but fun never the less. Jett BEGGED me to stay and have lunch with him, yum yum and by the time he was done he wanted to come home, so we signed him out.

I don’t have much to say. I guess I can honestly say that I am a bit grumpy today. Things are bugging me. ESPECIALLY people. But I don’t need to go there. I just need to go jogging or something. Honestly, I don’t have anything else to write and I am not sure why I made the choice to blog right now. If my mom was here, she would say, “I see the butt.” I guess when I get angry or annoyed, I get this line down the middle of my eyebrows. I can feel I have it. URG.

Oh, on the lighter side! East Valley Sol has voted Santana in and we got a $2,500 dollar check from money raised at a golf tournament. What a blessing that was! That is the cost of a Stander!!! So, why wait for insurance?! Shoot, we have not even gotten the letter from the doctor yet… 1 and 1/2 weeks later. So THANK YOU EAST VALLEY SOL!!!!! What a blessing you guys are!

One Week Until California!!!!

Friday night we load up and head to California! I can’t wait! We love LA and Newport Beach and my “adopted” brothers and sisters! For those that don’t know, my mom and step-poppa work at the L.A. Dreamcenter. The disciples call them mom and dad. So, they are my brothers and sisters, in christ! I wish I was there this weekend because my lovely “seester” Kimberly graduated her second year in the program and I love her so so much! Congrats DCD Graduates! Can’t wait to see you all. Oh! And my Tyree gets to meet Tyre, the prayer warrior he was named after!

So, in less than a week, we got an offer on our house. Let’s just say it was not God sent. =( But I am not worried because they were the first to go into the house and it is a 3 day weekend. I think we will wait and see what else is cooking. I know everything is God ordained. But we all decided if you REALLY want to offer us $50 grand less, then we will instead just put an elevator in this house which we LOVE LOVE LOVE so much.

OK… LISTEN UP!!!! OR should I say, READ CAREFULLY!!!! Someone, name to be remained silent, has put an offer on the table to MATCH the money we raise for Santana with the Diamondbacks game on June 17th! So, it is like we are getting the full price of the ticket! So!!!! Let’s blow them out of the water and have them hold their breath as they pull out their pocket book! ;-D Let’s get these tickets moving! I have to thank Marge and Nicole at Power Nissan Chandler who have been hitting everyone up. We really appreciate the time you take to do that! We will be out of town the first week in June so we REALLY need a commitment by THIS Friday! Let us know how many you want together! We will do our best! And YES, we will be there with Santana!!!!

Santana was so cute during church today.  I reached up and grabbed his knee and his little eyeballs turned towards me like, what?  Then I had one of his hands grab his other arm and he was trying so hard to figure out how to let go.  He was pinching himself so bad, but it was good because he was determined to let go and move away.  It was too too cute!  I just love him to pieces.  

We are off to my sister-in-laws church picnic.  Hopefully I will remember to take pictures.  I am so forgetful when it comes to that.  Crazy I know, you would think I would have learned since I hardly have any pictures of Santana, pre-accident.  Some FAMILY MEMBERS DO…but we have not gotten copies yet.  =(

Have a GREAT weekend.  Remember what this weekend is really for!  Remember that our men are out there laying their life on the line to give us FREEDOM!  Remember the ones who died for us.  Remember the ONE who died for us.  Jesus fought the ultimate war and paid the ultimate price for us!  Pray for military families…please!

Reality Strikes

So reality just hit me. Thursday we had someone come look at the house and they appeared really interested. Then on Friday morning I seemed to panic on the inside. I guess it was just the fact that it hit me that we will be selling our house that my Santana was well and healthy in. I will not be walking by the wall Santana colored on again. I will not think of the time Jett crashed his power wheel into a tree and Santana busted his tooth on. I will not be able to see the stairs that Santana would walk up in his lion outfit and turn around with his big cheesey smile (see video below). I will miss my neighbors, they have been so helpful! They are what I would call family. Jett will miss his friends. I will miss the school. I will miss the park in our neighborhood that Santana was so brave to go down a steep slide. I will miss the banister that Jett and Santana used to crawl over and jump on the couch. I will miss the playroom that they dumped a beanbag chair out in. I will miss the big bathtub they used to play in and bathe together. I will miss it. This is the house the kids are supposed to graduate in. James worked his butt off to get his family into this house. And soon, it will be gone. Gone.

Today, James had to work. Santana had therapy in the morning but after that, we loaded up and went out so the house was empty as someone else was coming to look at it. It was fun loading up all 3 of my boys and getting out on my own. I had to go pick some stuff up somewhere then we went to Del Taco on the way back since it had a big play thing that Jett could run off some energy. I am sure we were a sight to see to get in the door. Not to mention, Tyree decided he was hungry too. But, we survived.

Needless to say, I just got a call from my realtor and the first family is putting down an offer. We will find out what it is tomorrow. I am excited but not holding my breath. I know they know we are in a situation and sometimes I think someone may want to take advantage of the situation and get in cheap. But, we will stand our ground. God will send the right buyer. I just know it! Everything is going to fall in place, it has so far.

Santana has been snoozing a lot lately. Which, I am ok with. I think sleeping is the best thing for healing. I will say that when he is awake, he is making a TON of more noises and he is now moving BOTH arms and hands! He is not gripping anything or reaching…yet. It is just great that he has any movement opposed to just sitting there lifeless. Praise God!

“Then they cry unto the LORD in their trouble, and he saveth them out of their distresses. He sent his word, and healed them, and delivered them from their destructions.” – Psalm 107:19-20

No Change…

So nothing was changed. He did have to get blood work again to check his levels with the seizure meds being so toxic. But he was not too concerned about the platelets. Not until it is under 10 thousand. So that is good I suppose. I just wanted to give a quick update so that you would know what is going on.

I am LOVING the rain here in AZ. It is about time! Tonight we have to take Jett to his end of baseball season party. Woo hoo! Oh…Tyree just woke up, gotta go! Thanks for the prayers! Now, pray so hard this house sells quick!

So excited…

I just had to tell you that I am so excited about Santana in therapy today! We have been working with head control forEVER and today he did AWESOME! He slowly dropped his head, usually it is quick and hard. But we all kept saying… pick up your head Santana! He tried and tried, BOTH arms were moving as if to get his momentum and he rolled it to the right and up. LIKE 4 or 5 TIMES!!!! You can just see the determination in his eyes! He is fighting through this! I feel good…nana nana nana nana!

Anyways…gotta go get ready for our appointment. Pray for more good to come our way! NO MORE MEDS!

Yay! No fevers!

Absolutely no fevers for 24 hours!  WOO HOO!  I am so glad we are over that!  Santana slept from 11 am till 7 pm tonight. Ya think he had one more fight or what?  He looks great!  I did not send him to school today and boy am I glad.  It was so windy.  NOT good for him, especially since he just cleared up all his junk!  

For you out of state folks, can you believe we got to 110 degrees the last few days?  Yeah, I know, I made the choice to live here, and I complain every summer.  But it is MAY.  Last summer we had over 100 days over 100 degrees.  I don’t want to start that again.  The good thing is that it will cool off to the mid 70’s on Friday.  Strange huh?!  No wonder we all keep getting sick around here.  NO more of that, please!

Well, we are still waiting to see about the stander.  Another doctor is writing a letter so we will see what happens.  Although, I did find it 400 dollars cheaper somewhere else.  First I got quoted $5,000 and we are now down to $2,424.  I think forget waiting on insurance.  It just may be better to get it and get him standing.  Once that is bought, we are about $5 grand short of being able to do the umbilical cord stem-cell therapy.  That REALLY is exciting.  But I want to be sure to raise an extra  $5 grand so we can buy a lot of oxygen treatments. That is supposed to really help!  

Speaking of Oxygen treatments, we most likely will not being doing that for a while.  It cost me $95 to fill our car the other day!  Last summer when we were doing O2 treatments we had to fill up 2 times a week!  Umm…NO THANK YOU!  Back then I was complaining about $70-75 to fill up.  Yeah.  But I hear that AZ is actually on the cheaper side at $3.60 a gallon.  I don’t even want to know how much it will cost to drive to California that first week in June.  Ugh!

We have a neurology appointment tomorrow.  Please pray that we get off of some of these medications!  He is doing well on the diet.  He looks more alert since we started it.  So lets get off these drugs that dope him up!  Also pray that his platelet count being low is from the meds.  I don’t know that I can handle anything else right now.  I am comfortable where I am. Did I jinx myself?  So please keep us in mind around 1:00 pm mst.

Thanks to the ones who have purchased Dbacks tickets!  I hope some of you we have never met can go so you can meet Santana face to face!!!  God bless you all!  I love you guys!  Give me feedback and suggestions on the website.  I am still working on it.  Nothing is ever perfect for me when I do my own work.  I am my own worst critic.  I love you all!!!! 

Dbacks Game to Support Santana!

Ok…so now I got the flyer to show, but it is messing up my layout!!!!  I deleted the old one to start over and still having issues. Thanks for letting me know Jaimee!

Go here to see:

http://www.prayforsantana.org/images/dbacks.jpg

Ok…This is it for now.

1 year 5 months 2 days

I have been working on this for 2 days straight.  And I give up for now.  I will tweak it more when I have more time.  But I am exhausted.  As you can see, for now, there is no guestbook, BUT, you can comment on each post.  I have NO idea if it works.  But hopefully we will soon find out.

Santana didn’t have much for fevers and if there were it did not go over 100 degrees today.  So hopefully we are on the up and up.  He is making more noises today so it means he must be feeling better.  His heartrate is coming down too.  YAY!  He is still junky, but it is minor to what we have been dealing with the past week!  

Thursday, we go to Neurology so I will be able to check out the old blood work and look at the platelets.  I am still stumped about that.  But I am believing it is the meds for now.  No one really has an answer for me.  FRUSTRATING!

Well, today we are officially going to try and make a change.  We have not had our own bedroom for 16 months now.  A few months back we moved our bed from upstairs to down in the living room with Santana’s bed and equipment.  But it is just not working.  Not when we have all that house upstairs that is unused.  So, we put our house one the market today.  I know, I know, BAD time to sell.  But God put some people in our paths to where we can have a house built custom for Santana’s needs.  We just need to find and purchase a lot to put it on.  The problem?  Well, we can’t get the process started because we need money down that we don’t have until our house sells.  So, we will have to go to a rental until it is finished.  So not fun. But in the end it will be worth it.  It is not because we are giving up, but it is because we are living for the moment.  Why pay a big utility bill when we are in one room.  We are going to miss this house more than anything.  We will miss our neighbors and some other friends around the corner that Jett absolutely LOVES to play with their son. We could not have had better neighbors/friends during this time of need.  But they don’t have to live like we do.  We need to get out.  We deserve a better way to live and get some normalcy back in Jett’s life.

I need to get.  I am beat and I have meds to do.  Thanks for your patients and support!  I am still trying to get videos and all that up, so keep checking.  Thank you for the prayers and keep BELIEVING!!!!!!!!!!